Registry bid to tackle devastating condition

Registry bid to tackle devastating condition

8:00am Saturday 19th May 2012 in News By Barry Nelson, Health Editor

THOUSANDS of people affected by a form of muscular dystrophy are being invited to sign up to a new national registry based in the North-East which could help lead to a treatment or cure.

The initiative is being backed by Blaydon MP Dave Anderson, who has lost his sister, brother, niece and nephew to myotonic dystrophy.

He said: To tackle myotonic dystrophy effectively, we need the thousands of families affected to speak up.

Until now, no database has been available to researchers of people in the UK affected by myotonic dystrophy, an inherited condition, which causes muscles to waste, weaken and stiffen, often leading to increasingly severe disability, learning difficulties and shortened life expectancy.

The new Newcastle-based registry, funded by the Muscular Dystrophy Campaign and the Myotonic Dystrophy Support Group, will allow clinicians and researchers to speed progress towards a treatment by enabling them to contact people faster, recruit for clinical trials and to better understand the condition.

The charities are appealing to the estimated 6,000 people in the UK thought to have Type 1 myotonic dystrophy to come forward and add their details to the register, which will be run by a specialist team headed by Professor Hanns Lochmuller, based at Newcastle Universitys Institute of Genetic Medicine.

Myotonic dystrophy is passed down family lines by men and women, with the risk of it increasing in severity each time it is inherited.

The onset of the condition can begin at any age, with some affected severely from birth and others experiencing no symptoms until late middle-age.

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Registry bid to tackle devastating condition